Tuesday, December 31, 2013

The boys headed in for a dentist appointment with the most kid friendly office I have ever seen. Our dentist has wall to wall toys, and prize boxes. Every time the kids do something right they get to play with a game boy or take a token to the prize machine. When I told the boys we had an appointment they were so excited, they wanted to go right then!

Miles opening wide for Mr Sucky! He thought it was awesome to have his spit sucked up!

Mason did so good, both boys did but... Mason has a sensitive gag reflex and he muscled through like a champ.

Miles loved the idea of getting pictures of his teeth, he held still and they got pics of all his teeth! Yea, Miles!

Monday, December 30, 2013

Mad Max is growing and changing faster than we would like. His arrival has shown us how sweet and thoughtful our older boys can be. When the he cries the boys come running from all corners of the house to make sure he is ok and shove (sometimes violently) a binky in his mouth. He's forced us to slow down and spend more time together. It's been a wonderful change, some how I had forgotten how much a baby slows me down. Here are a few things about our baby.

Max:

Fights sleep worse than any baby I've ever seen

He can hold his big bobble head up like a pro

He loves to be rocked by daddy

He has the worst latch, and is one of the noisiest eaters

If I turn on the vacuum he will sleep

If the boys are screaming and the TV can't get any louder he will sleep

He co-sleeps with us right now, and he is doing great during the night

He already has a special bond with Miles, they share binkys all day long!

Here is little man sound asleep in his Bumbo, he fussed and fussed... And fussed himself into a nap.

Wednesday, December 18, 2013

Our dearest friends know about how awful last Christmas was for us... I'm going to record what I remember here, so that we have a record of the events for Miles in years to come.

Just thinking about last year makes my heartache...

I had got off from work a little early and snuck home to clean and straighten our place before I picked up the kids from Daycare. When I got a call from the daycare that Miles had had a seizure and was unresponsive. I raced to his daycare to find 5 workers standing around his room watching him, all looking terrified. I was sick, heart stopping, gut clenching sick... I walked to his room and he was playing and acting like a champ... I asked for a full account from the women who had found him:

He was playing inside one of the houses with a little girl, the worker heard the girl call his name over and over. The checked to see what was going on and found him slumped against the wall, his eyes rolled back in his head and he was unresponsive. He came right out of it, acting as though nothing had happened.

I quickly packed he and Mason out to the car and called my friend Kristy, I let her know what had happened and asked her to take Mason. I then called Micah who was out of town in AZ for work and sobbed for him to come home. He got on the next flight into Portland. Next I called my friend Stephanie who works as an ER nurse at our local hospital, she was working at a different hospital that night but she called friends who were working and asked them to check on Miles and I.

I got to the hospital and they observed Miles for several hours and then sent us home.

Micah made it it home late that night, our good friend Kenny drove 4 hours round trip to pick Micah up and bring him to me. When he finally got home well late that night, I sobbed into his arms. You seenI had just finished my Anatomy and physiology requirements to apply for Nursing programs. I knew enough about seizures to be terrified for Miles, but not enough to actually do anything constructive to help him.

We went to our Ped Dr Kordesch the next day and she cleared her schedule so we could really talk about how we were and what we needed to do. After hoarding an hour of her time, she gave me her personal cel phone number and asked to call her day or night if he had another.

He did.

With the second seizure We went back to the ER and they observed him and sent us home. We waited through several more (with each new seizure I became more hysterical) and during an awful episode, where I felt like he was trying to talk to me but couldn't, we took him back in.

Our ER doc was a little floored that we has our doctors private cel phone number and did a quick consult with her over the phone and admitted us. The hell truly began then.

He seized over and over again daily. It was so very terrible that I thought we were going to loose him, he went from one seizure a day to multiple seizures a day in 4 days. We went through test after test after test each one more inconclusive than the last. He was put on insane Meds, phenobarbital, depakote... And each med made him comatose for long periods of time and then he would wake up and we would repeat the seizing and testing until his dosage was so hi that they couldn't go any higher. We were in our local hospital for 6 days, until they realized that his seizure weren't interrupting his brain waves, they stopped his mobility and communication, but not his brain waves.

We had more questions than answers and we were sent home with a heavily medicated little boy, with no idea what was wrong or how to fix it.

My parents had come in the middle of all this and stayed at our place, taking over Masons care and our home while Micah and I lived at the Hospital with Miles. We decided that my parents should takes Mase home with them as we had no idea how much longer this was going to go on.

We got home on the 23rd of December, Micah and I took turns running around buying presents trying to put together some kind of Christmas, poor Miles was a zombie through most of the time we were home. Micah flew out on my birthday to bring Mason home. Several hours after he left Miles developed a rash, several hours after that we were back in the ER for a major allergic reaction. Miles was on several types of drugs and since we didn't know what was causing his reaction I pulled him off everything.

Back at square one, there was nothing else our Hospital could do for us. We were sent to Portland, to OHSU. I drove through the night to Portland exhausted and scared, Miles even full of Benadryl stayed awake and helped me stay awake to make it there. It was either I drive him or he be transported by ambulance, I was terrified of being separated from him so I drove.

Every test we had done previously was repeated. The blood draws were constant it seemed and Miles would cry every time the nurses entered his room... It got to the point that a nurse informed me of my right to refuse. At this point they couldn't find a vein to draw from, his arms and legs were bruised and we were down to milking blood from pokes in his toes. I refused all draws then and there... Without an express explanation of the necessity of the draw and without first communicating with the other doctors to makes sure said test hadn't already been run or couldn't be added onto something already being tested.

We were at OHSU from the 28th to the 31st. Our doctors there came to the same conclusion, he wasn't having seizures... He was having seizure like events (say what). What ever he was going through was not disturbing his brain waves. We were sent home to observe from home his "events" and referred back to our original ped neurologist.

I refused all possible meds for Miles and we went home. To this day, we have no idea what caused his "events" or if they will come back. Miles recovered on his own.

I live in constant fear that he will start again. Every time he doesn't answer me my stomached clenches a little and I worry...

I built a lot of forts while we were in Portland... He felt safer in his forts!

During his 2nd EEG (it took 3 long hours to attach each wire, I restrained him through each placement)

Tuesday, December 17, 2013

We had a rough start, he and I struggled with all things newborn, but we persevered!

The Langworthy's took the boys overnight and they had a blast watching little Mermaid and eating pizza!

Kristy woke up in the middle of the night hearing someone down stairs. She yelled from the top of the stairs "I'm up here". And Miles came running sobbing and screamed at her to "GO TO BED." She yelled back, "No, you go to bed," Miles walked up the stairs and went to bed... Such a funny kid!

Mad Max, has no patience with us, he yells the moment he realizes he needs something. He snorts and grunts all night long. Poor Micah moved to the spare room just to get a decent nights sleep. unfortunately the boys have had no issue with the extra noise and are still hanging out in our bed?..

We are all enjoying the adjustment of a new member to our family and Max has a jumping through hoops already to get a glimpse of one of his smiles.

The boy took a month of swim lessons. Miles has no fear and gave me and his teachers lots of heart attacks ( they brought an assistant in to assist in his class of 3). Mason will almost put his head in the water.

We visited my parents for a week, and spent Mason's birthday with family!

( Mason and Riley)

Miles got a kick out of Grandma Maxine. She laughed at all his jokes, and he at hers!